Log in

I forgot my password

Latest topics
» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Hi, I'm new (from the UK)

Go down

Hi, I'm new (from the UK)

Post  Dina on Fri Jun 17, 2011 7:06 pm

Hi everybody!

Great to see that there is a support forum for this! I'm pretty sure that I have vulvodynia, but still waiting for my GP to bother giving me a diagnosis. This all started after I had my first child back in 2007. Very soon after I noticed a horrible burning/stinging feeling upon penetration and it was the same every time. After over a year I went to see my GP who said I probably had a nerve problem where my stiches had been. He gave me gabapentin and referred me to the gyno at the hospital. The gabapentin started working straight away and I was soon painfree, and by the time I finally got my appointment at the hospital there was no pain for them to assess.
I stopped taking gabapentin a few months before I got pregnant again and never felt the pain again. But then a few weeks after I had my second child I noticed strong discomfort on touch, particulary in the area around my clitoris or urethra (if I can manage to climax I don't get a wave of pleasure, I get a sharp, deep shooting pain all the way down my thighs). It was only upon contact at first and I didn't really feel up for sex anyway because of my baby blues, but then suddenly it got much worse. I started getting so much pain that it was sometimes difficult to walk, or sit and my trousers were getting to tight to wear. I also had periods of little or no pain unless there is direct contact. I already have an existing issue with my bladder (long story short, my GP messed up my meds for a UTI and I ended up with an overly sensitiv bladder so I constantly feel full and have to use the toilet at least 20 times a day) so my first thought was that this was something relating to that. I get UTIs at least 4 times a year so I went to my GP and got some antibiotics but it didn't improve.

So after 4 appointments with my GP I've now had another appointment with gyno but the seriously stressed gyno I saw didn't have time to listen and thought that all my problems (I also had a seriously heavy and irregular period) would be solved by removing my copper coil. Well, the coil has been out for well over a week and I still feel this constant throbbing pain.
I have an appointment with my GP on Wednesday and could really do with some help in regards to how I can get a diagnosis. My GP doesn't seem familiar with this (the GP that gave me the gabapentin left the clinic so I can no longer see him).

Dina

Posts : 2
Join date : 2011-06-17

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  noni on Fri Jun 17, 2011 9:07 pm

Get a refferal to a VULVAR CLINIC or PELVIC PAIN SPECIALIST.

or to a PAIN CLINIC.

Goodluck !!! Smile
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Aussie on Sat Jun 18, 2011 12:04 pm

hi there,

it sounds like you have been suffering with ic for a while now. look into the diet. It may help with frequency also have ic. As for vulvodynia, a women's health physio is better than any one to assess tension in pelvic floor which will be contributing to pain. Gynos i found have been les experienced with these issues. Will write more on monday , too hard on my phone.

Claire x


Aussie

Posts : 227
Join date : 2011-03-15
Age : 29
Location : Queensland, Australia

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Sarah001 on Sat Jun 18, 2011 12:52 pm

Hi and welcome. Aussie is right a Women's Health Physio is where you need to be to have the pelvic floor checked out, only being hooked up to a machine with a vaginal sensor in place will give you precise readings and information about what needs doing. V can be caused by tight muscles, weak muscles or tight and weak muscles so it can vary from woman to woman. Strangely I have a friend with burning mouth syndrome and she was also told the coil she had in place could be behind that, I don't know how exactly but it was something she recently discussed with me.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Dina on Sat Jun 18, 2011 6:07 pm

Do they have these clinics in the UK? I have been referred to physio at the hospital before do learn pelvic floor exercises for my bladder, but that was years ago though.

Dina

Posts : 2
Join date : 2011-06-17

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Aussie on Mon Jun 20, 2011 3:18 am

They will have clinics in the UK for sure. Ask Sarah on that one, but any women’s health physio should be able to give you some guidance, it is just finding the right one that is willing to work with you, getting those trigger points to settle and stay settled down.

Have you tried the IC diet? www.icnetwork.com

Some times 'kegles" prescribed to help frequency can make the condition worse and in some cases better, so an assessment by a competant physio is essential, you don't want to do the exercises wrong.

If you gp can't give you a diagnosis - of 'vulva pain' (vulvodynia) - excellent diagnosis doc Smile - then change gp's. I had to go to 4 gp's then 2 gynos to get my 'you have vulva pain' diagnosis. Bloody idiots, not that it really matters, we already know what we have.

Anything else I can help with give me a shout, always happy to give advice. We are all in this together.

Claire


Aussie

Posts : 227
Join date : 2011-03-15
Age : 29
Location : Queensland, Australia

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Sarah001 on Mon Jun 20, 2011 11:28 am

There are vulval clinics but they tend to have a huge waiting list, there's a list in the info section I think but it is exactly as Claire said you need a Women's Health Physio. WH Physios are available on the NHS if you can find one in your area but again have a waiting list because there aren't many but there are private ones who charge the same as normal physios. Mine was private and she charged £32 a session. They can test your pelvic floor to see how tight it is, whether you can relax it etc and give you a program to suit your own needs.
avatar
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Sebby (Admin) on Mon Jun 20, 2011 6:03 pm


Welcome to the forum..yes there are Vulval clinics...see forum link below

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics

Ask to be refered to the one nearest you


_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 37
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Re: Hi, I'm new (from the UK)

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum